A Case for Having Our Experts Involved

I'm hoping the contract can be stopped. But I also think the worst thing we could do is let them staff that panel without people we trust. Here is the way I see it...

Assuming our efforts don't manage to stop the whole thing from happening, there are two groups of possibilities:

If we don't have a significant number of our own experts involved, the possibilities are:

Case 1: They create something inferior to the CCC. Our illness is a difficult one to truly understand, and I can't see any real chance of people with no experience with it really getting this right.

or Case 2: They create a disaster, with potentially tragic consequences for us and potentially lasting after-effects.

If we stack that panel with as many real ME experts as we can, the possibilities become:

Case 3: They come up with something decent or very similar to the CCC (I don't think this is terribly likely, but I'll list it anyway).

Case 4: They create something inferior to the CCC.

Case 5: They create a bit of a disaster, but there is a lack of consensus in its creation and possibly dissenting opinions on record that would give it less credibility and possibly make it easier to fight. There is also a good chance that with vocal experts involved, the most deeply misguided elements might be kept out. The more of a majority our expert voices have, the more likely the consensus will be in our favor.

If knowledgeable people are involved, the best case outcome becomes a bit better, and the worst case outcome becomes a bit less bad. We might be able to avoid that nightmare scenario we're all most worried about. Either way is probably bad, but which is worse? A panel stacked with our experts, or one without any of them? The first one stinks, but the second one sounds profoundly scary to me.

Obviously the majority of us think it would be best all around if the contract didn't go through, and I think we should continue to try to fight it. But if there's a chance that it's moving forward regardless (and there does seem to be a very good chance that it is), then we need to get as many well-informed people as we can involved with it. That doesn't mean they have to sing its praises. They can be opposed but willing to serve if it comes to that.

The argument is not whether or not the IOM project is a good thing. The argument is whether our experts should be involved with it in case it does go forward despite our protests. Is the risk of the disaster that could be created without their expertise great enough to make it worth supporting their involvement (while still making it clear that we formally object to the project).

I really think that it is. I hope if this moves ahead despite us that the list of participants reads like a who's who at the top of the ME research and treatment field. Why take the chance of anything else? According to the patients affected, one of the biggest problems with the Gulf War Illness version was that the right people weren't involved. We need to learn from that and make darn sure that we have every fighting chance we can.

I think that if some of our trusted researchers were by some chance chosen for the committee, they would have the guts and integrity to quit in the noisiest and most public mannner if they felt things were being controlled in a devious fashion. Chris

I think benefitting from having the process include trusted experts has a flaw in that it presumes equality among the participants. I suspect that that might not be the case here.

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Even assuming things were ragingly unequal, though, I would still rather have a discussion taking place with people present who knew what they were talking about than the same discussion with everyone equally ignorant. There are so many ways for that to be a more positive outcome for us. Not a perfect outcome, but almost certainly a better one.

Even in the worst case, if the IOM document was terrible, but our experts were involved, we come out farther ahead than we would have been without their involvement. If all that came out of it was that our experts could say afterward that they disapproved of what happened and that the end result did not reflect the recommendations of the experts on the panel, we've gained something important. We'd be far ahead in terms of rejecting the IOM definition and having that rejection taken more credibly. The alternative is that the IOM can say they called for nominations of experts in the field, and solicited for volunteers to contribute, and that everyone on their panel agreed with the end result. That is far, far harder to fight against (if needed), and isn't likely to convince other doctors to think twice about what they're presenting. It makes it sound like their doing everything in their power to help us, and puts us in the role of bad guy.

And more importantly, if they can influence the end product even a little, we benefit. Every tiny change or nudge they were able to make would be in our favor. We may not get a valuable document out of it, but it's got to be better than the one we'd get otherwise. It seems foolish to me for us not to take advantage of that.

I think that if some of our trusted researchers were by some chance chosen for the committee, they would have the guts and integrity to quit in the noisiest and most public mannner if they felt things were being controlled in a devious fashion. Chris

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I think this is right, but I also think that many will not sign up to be on the panel as they already have these concerns.

The topic on this thread is risk management. Taken in that context it makes sense to have as many of our experts on the panel as possible. However the IOM always had the option to find such experts. They chose instead a path that minimizes expert involvement, whether intentional or not, by restricting the time and opportunity for expert recruitment. I really hope that we get lots of ME experts on the panel if it goes ahead. What I doubt is that this is even a likely outcome regardless of what we do. I would like to be proved wrong on this doubt.

One problem, as An IoM person told PANDORA, is that few clinicians end up on these panels because they are not paid.

Another problem is because of IoMs stated criteria for selecting all panels, it is unlikely that more than a small minority of ME experts will be chosen. Firstly because of the emphasis on diversity of the panel. Secondly because they consider being in a position to apply for grants from the sponsoring institution, NIH, on the topic, ME, to be a conflict of interest.

On the other hand, the Statement of Work did allow for some people with ME expertise. I am not sure how they are going to reconcile that with the fact that they consider those who are up for consideration of NIH grants for ME with this provision. One likely outcome is that Dr. Vernon will be on there as a token ME expert, considering she doesn't do lab work directly funded by NIH, she has case definition experience as co-author of the Reeves criteria, and IoM at first tried to secretly and with lightning speed solicit nominations from only four groups including CAA and no one else. They subsequently gave us a few extra days according to Andrew on the forums, but I don't think that made a big difference.

That said, I think it is a good idea to get as many ME experts on there as possible, though I doubt it will end up being more than a token minority. I submitted nominations and I will comment on the provisional slate of panel members.

The much more important focus, though, IMO, is trying to get this contract crushed.

Watch them spend all that money coming up with a definition just to have Dr. Lipkins study and some of the Aussie studies or ones that Simarron is linked too prove something completely opposite of what their definition states. They will look like a bunch of dumbasses then!!!

This just tells you how little Sebelius knows about ME/CFS because trying to come up with a definition right now with all these game changing studies going on does not make a bit of sense and is a complete waste of money.

I am writing to alert you or remind you that CFIDS Association of America does not represent patients or, historically, good science. There is a petition with many signers to this effect. There are polls on each of the two biggest patient forums which are nearly unanimously opposed to CAA. Their grades and ratings from sites such as charitynavigator are low. The thread of comments opposing CAA is the longest thread on the largest patient forum, Phoenixrising with something like 1,500 posts, if memory serves.

I'd like to repeat my opposition to any nomination of Dr. Suzanne Vernon, of the CAA, who was a co-author of the Reeves Criteria for CFS which has been thoroughly discredited in the scientific literature by Professor Leonard Jason et al.

I would like to know which other parties other than CAA and PANDORA did you ask for nominations and whom did each of these organizations (other than PANDORA which has disclosed it's nominations) nominate.

I have previously nominated the original 35 signers of the expert letter to HHS plus some others.

I would now like to heartily endorse all of PANDORA'S nominations.

Thank you for your consideration. I look forward to your timely response.

I'm not sure how many knowledgeable people will realistically manage to get involved with the IOM panel. I'm just hoping it will be as many as possible. There seems to be a subgroup of patients really berating PANDORA for making nominations, and actively pushing against any experts who are considering signing on to join the project if we can't manage to stop it. It frustrates me to see people putting so much effort into that. Into stopping the IOM contract all together, sure. But if it might end up going forward anyway, I feel like actively trying to stop knowledgeable people from serving on that panel is not in our best interest.

You know what just occurred to me... We need to find some sympathetic and well-informed psychiatrists and nominate them to the panel with overwhelming force. As much as it seems like mental health professionals shouldn't be included, it seems likely one or more will make it on to the panel who have that specialty. It would be great to be able to take up those spots with people we know actually "get" it. There are some out there who do...

Eleanor Stein is a psychiatrist and did some good things with her Guidelines for Psychiatrists in terms of emphasizing that ME/CFS is not a mental illness. But she's Canadian. I'm assuming we're looking only for experts from the USA?

I thought about this general issue (of how/whether to participate if it is going ahead) quite a bit while writing my recent article. My personal opinion on it (in short) is that Pandora did an excellent job of recommending suitable experts, and they were right and responsible to do so for the reasons that Sparrow has outlined. I don't see how doing so undermines efforts to oppose the contract and get it cancelled. Whether experts should then agree to 'collaborate' on the panel is then another tough choice for them, but in the end I think it all comes down to whether near enough everyone (experts, orgs and advocates) is prepared to stand united against the contract and whether you think that can meaningfully undermine its end result - if not, then participation to try to mitigate the effects seems like the least bad course of action.

However, I agree with Alex that I'm extremely sceptical that any efforts to get expert representation on the panel - or even proper consideration of expert views by the panel - will meet with success anyway. I believe the community should try, because you never know what you might achieve, but all the indications are that they panel will be loaded with people with..erm...different perspectives, and it's hard to see what good can come from the project with such people heavily involved, even if there are a few knowledgeable people on the panel. I think the nature of this contract and the way it was set up and announced is completely wrong, it's not what the expert and patient community want, and with such widespread opposition to it, it's right that most of the effort right now should go into trying to get it stopped - or at the very least registering loud and clear that we don't recognise its legitimacy.

The mecfs@iom.edu email address is not working for me again. I resent my email with the following addition to Kate Meck at kmeck@nas.edu

I tried emailing mecfs@iom.edu and my email got bounced back again. I think this is the right address. Looks like there are problems with it again.

Let me preface this email by saying that I still vehemently oppose this contract. But should this contract go ahead, God forbid, I want to mitigate any damage it would cause, which I why I write to you today.

I urge all you guys to write in to kmeck@nas.edu to let them know to reject CAAs nominations. You can just cut and past anything from my letter or use the whole letter, no attribution necessary. Or simply say I agree with Justin Reilly's email saying to reject all CFIDS Association of America nominees.

Who has the CAA nominated? Is there a list available? If there are people on that list who would be good additions to the panel, I don't want to risk hurting their chances by making a blanket statement.

Who has the CAA nominated? Is there a list available? If there are people on that list who would be good additions to the panel, I don't want to risk hurting their chances by making a blanket statement.